Authors :
Presenting Author: Sonya Swami, – Dell Medical School at The University of Texas at Austin
Ananya Sampathkumar, High School Diploma – The University of Texas at Austin; Rosario DeLeon, PhD – Dell Medical School at The University of Texas at Austin; Karla Robles-Lopez, MD – Dell Medical School at The University of Texas at Austin; Dave Clarke, MD – Dell Medical School at The University of Texas at Austin; Nancy Nussbaum, PhD – Dell Medical School at The University of Texas at Austin; William Schraegle, PhD – Assistant Professor, Neurology and Pediatrics, Dell Medical School at The University of Texas at Austin
Rationale:
Approximately half of all children and adults newly diagnosed with epilepsy also show behavioral and/or cognitive difficulties upon evaluation. While neuropsychological screening is recommended by the ILAE as a routine part of care at epilepsy onset, in reality, access to care is often restricted by many factors. In order to better define the extent of the problem, we surveyed neurologists (N) and neuropsychologists (NP) to clarify how frequently youth with new onset epilepsy are referred to and currently undergo neuropsychological evaluation or screening.
Methods:
We created two online surveys to better understand new onset epilepsy care provided within neurology and neuropsychology practice settings in the United States and Canada. Both surveys were disseminated via the AES newsletter, professional listservs, and colleague recruitment. Respondents included 39 neurologists and 47 neuropsychologists. Survey questions were grouped by the following domains: 1) practice setting characteristics (e.g., type of practice, affiliation with comprehensive epilepsy center, number of epileptologists, use of virtual testing); 2) volume of new onset epilepsy patient cases (e.g., percentage of practice focused on new onset patient care, percentage of new onset cases referred to/received neuropsychological evaluations/screeners, wait time); 3) views on neuropsychological evaluations (e.g., when to refer, contributions of neuropsychology evaluations); 4) perceived barriers.
Results:
Respondents largely work in academic medical centers (N= 90%, NP=77%) and are generally affiliated with comprehensive epilepsy centers (N=95%, NP=86%). Most practice settings have ≤ 3 pediatric epilepsy neuropsychologists as reported by 77% of Ns and 64% of NPs. Interestingly, Ns and NPs are largely in agreement that 0-25% of new onset epilepsy patients were referred for neuropsychological evaluation (N=67%; NP=70%). Regarding access, most N’s (69%) and NP’s (83%) estimated nonsurgical epilepsy patients waited up to 9 months for a neuropsychological evaluation. Reported barriers to patients receiving neuropsychological evaluations included: limited availability of neuropsychologists, insurance denials, families’ difficulty accessing care (e.g., transportation challenges), and the need to prioritize pre-surgical patients. Most Ns (69%) agreed that neuropsychological evaluations significantly contributed to the care of non-surgical epilepsy patients. However, a sizable minority (31%) indicated they only “sometimes” knew when to refer.
Conclusions:
Results of this provider survey indicate that children with new-onset epilepsy do not routinely undergo neuropsychological evaluation (≤ 25%) despite being a recommended standard of care. Reported barriers include a limited number of neuropsychologists, insurance approval, delayed referral, and families’ difficulty accessing care. Possible solutions to improve timely access to care include utilizing efficient and sensitive screening batteries, clarifying the referral stream, incorporating virtual assessment technology, and increasing the number of pediatric neuropsychologists in the future.
Funding: Loretta & Jeff Clarke Gift